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What Is World Hemophilia Day? Facts To Know About Rare Disease.

World Hemophilia Day is observed on April 17 - a day when organizations like World Federation of Hemophilia (WFH) and the global hemophilia community get together to spread awareness about this rare genetic disease.

The theme of World Hemophilia Day 2018 is "Sharing Knowledge Makes Us Strong," stressing on the importance of sharing what you know about bleeding disorders with as many people as possible in order to help millions who remain without awareness or access to proper treatment.

"World Hemophilia Day is a wonderful opportunity for our community to make its presence felt," Alain Weill, president of WFH said, ( Hemophilia World reported. "Our focus this year is on Sharing Knowledge because we are convinced that knowledge and education are key drivers in stronger support for patients in our community."

He added: "The WFH has a long history of collecting data and sharing knowledge. The WFH World Bleeding Disorders Registry (WBDR) is an example of how data collection will be used to advance the understanding and care of people with hemophilia worldwide. An accessible patient registry strengthens our capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders."

World Hemophilia Day was first observed in 1989. For more than five decades, the WFH has been trying to get treatments for the condition across to places where people are not even aware that such a disorder exist.

According to ( Mayo Clinic , "Hemophilia is a rare disorder in which your blood doesn't clot normally because it lacks sufficient blood-clotting proteins (clotting factors). If you have hemophilia, you may bleed for a longer time after an injury than you would if your blood clotted normally."

Some of the symptoms of the rare condition include inexplicable, excessive bleeding from injuries, especially after surgery or dental work, suffering unnatural number of large or deep bruises, bleeding after vaccinations, pain, swelling or tightness in joints, blood in urine or stool, random nose bleeds in infants and irritability without a proper cause.

Here are a few more facts about the genetic disorder:

For people suffering from hemophilia, a slight bump on the head can cause internal bleeding. Due to the lack of clotting agents present in the blood, the condition can end up causing hemorrhage inside. Some of the symptoms that lets one know that one is experiencing prolonged internal bleeding are long headaches, repeated vomiting, double vision, lethargy or sleepiness, weakness or clumsiness and convulsions or seizures.

While most forms of hemophilia are inherited, 30 percent of the cases diagnosed have no history of the condition running in the family. In these people, a sudden change in one of the genes associated with hemophilia triggers the condition inside one's body.

About 1 in 10,000 people are born with hemophilia and the condition affects around 400,000 people across the globe, according to WFH, ( Times Now reported. 

There are two kinds of hemophilia - hemophilia A (due to factor VIII deficiency) and hemophilia B (due to factor IX deficiency). The first kind is more common than the second one and the method of treating both are different from each other.

Not everyone who is affected by the disease show the same symptoms. The condition may range from mild to severe in people who experience it.

There is no permanent cure for the condition but certain kind of treatments can help a hemophilia patient live a normal life. One of these treatments includes getting injected by a genetically engineered clotting factor medication, that helps prevent prolonged bleeding.
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Publication:International Business Times - US ed.
Date:Apr 17, 2018
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